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Sam's Surgery -- May 05, 2003

Sam's going in for surgery this Wednesday to repair what the neurosurgeon believes to be a meningocele on the back of Sam's skull. It's impossible to convey in text the anxiety that David and I are feeling.

As most of you have already learned, one of the main features of Joubert Syndrome is the irregular breathing pattern and central apnea. Because of this, many children with Joubert have had machines help them breathe. Sam has fought to breathe on his own from the beginning. But during surgery his ability to fight will be taken away from him as a result of the anesthesia. He will be heavily sedated. He will be intubated. And a machine will help him breathe.

We are so grateful to every one of you who has written or called offering us support when we embarked on this difficult journey. Your kindness and compassion have helped us tremendously. Now we'd like to ask that you focus your thoughts on Samuel to help him with the strength to continue to fight. We will update as soon as we return from the hospital.

had i not crested each wave of labor to your glorious
emergence
had i not been there for your debut
i would have thought you were dropped from heaven
your body damaged in the fall
but your spirit whole — big, beautiful and pure

never imagining my love to be so complete and selfless
not expecting my fierce desire to make your little body able
and perfect
or my fear to change anything
lest my meddling somehow diminish your beauty